and his will to live

Our trip to Pittsburgh

We drove into Pittsburgh to start our process of pre-evaluation for a liver transplant Tuesday night. We started our trip at midnight and Lennon was awake for most part of the trip till about 5 a.m. before taking a short nap.

The first appointment that day was labs… whew what a confusing mess…check in with registration…receive a pager..wait for pager to go off… after that we met with Anesthesia but that was short because its technically one of those things that happens later…closer to surgery.

Next we had a psychological evaluation…painless…lots of talking..lots of note taking and being told we should see a therapist.. umm yes…

Next and the last thing for that day was Radiology… Ultrasound, CT Scan and XRay. Lennon was doing so well.. I have never seen him cooperate as much as he did then. The CT Scan was interesting.. the cool thing is that it is definitely kid friendly with pirate and castle murals all over and a ships wheel on the scanner.

He was so tired that he crashed rather quickly that night. Wednesday was another big day for Lennon. Genetics clinic…really just meant going over his urea cycle disorder, the history before diagnosis and everything that happened afterward. After that we had “teaching” about liver transplantation.. most of it was not new but I really liked how they explained it all..anyway.. after that we had a meeting with Hepatology (liver specialist)…not really eventful.. so the next appointment was with infectious disease which covered exposures, live viruses and other things I can’t remember. The last test of the day was Cardio which he had an EKG and an ECHO done. Lennon did well even though he started to get restless… he does not like the goo they put on you during those tests.

And now to today’s fun activities.

Today… well what about today… First thing on schedule was hematology. We talked about Lennon’s coagulation issue and the doc ordered 20+ tests checking for inborn, inherited and acquired blood diseases and/or coagulation issues. After that we met with transplant and were able to see the CT SCAN pictures. The docs seem confident about doing another transplant but here is where it gets tricky.

Despite the contrast given at the scan the vena cava vein could not be detected clearly or clear enough.

The superior vena cava is the large vein which returns blood to the heart from the head, neck and both upper limbs. The inferior vena cava returns blood to the heart from the lower part of the body.

I was actually trying to find a picture and I couldn’t. Anyway, they admitted Lennon because … a) they want to do an hepatic venogram in the morning and because some of his levels in the blood are off they want to be able to infuse platelets if they need to. Anyway, depending on the outcome of the hepatic venogram it could very well change the way they will proceed in terms of the “technical aspects” of the transplant surgery.

In addition, however this means this liver could be a lot sicker than the biliruben indicates when they do the blood tests.

As we were getting comfortable in the room, and they checked Lennon’s oxygen it was at 88. They now are given him oxygen and will order another xray to make sure that all is well.. and that he’s doing okay.. I don’t know if this answers anything or not but this is our experience thus far.

It almost sounds like that they only way Lennon may have a chance at a good life is to go through another transplant. The doc feels thinks that Lennon would do well. They would use a whole cadaver liver as opposed a partial one as they have done in the past.

So this is where we are … I think.. I may have missed something.. ok may be not.